Use of crowdfunding for expenses related to medical hair loss

Desai, Sheena; Manjaly, Priya; Lee, Karen J.; Li, Sara J.; Manjaly, Cyriac; Huang, Kathie P.; Mostaghimi, Arash

doi:10.1016/j.jaad.2020.09.008

Cited by 9 publications

(8 citation statements)

References 5 publications

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“…The observation that 40% of families who reported having health insurance still noted inadequate coverage suggests that medical expenses are a problem in both insured and uninsured patients. By comparison, only 16.4% of crowdsourcing campaigns for alopecia made references to health insurance 3 6 and may be partially responsible for these findings.…”

Section: Discussionmentioning

confidence: 86%

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Crowdsourcing as a means of fundraising for juvenile dermatomyositis

Goldman

Kassamali

Shahriari

et al. 2022

Pediatric Dermatology

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Juvenile dermatomyositis (JDM) is a rare, idiopathic inflammatory myopathy with an annual incidence ranging between 2 and 4 per million children. Previous research indicates significant financial and psychological hardship in patients and caregivers of orphan diseases. 1,2 These burdens can complicate treatment goals, and their full extent often goes unrecognized and therefore unaddressed by medical providers. Previous studies have analyzed the use of crowdsourcing for more common dermatological diseases. 3,4 This study utilizes publicly available information published on the crowdsourcing platform GoFundMe to characterize how this platform is being used to address the financial and psychological burden associated with this rare illness. | ME THODSForty-eight campaigns were identified using the GoFundMe internal search engine for JDM from 2013 to 2021. Campaign narratives in the fundraising description and "Updates" sections were qualitatively analyzed for common characteristics. A codebook was then created to collect information on reported demographics, fundraising goal/money raised, and common themes related to expenses and sources of financial hardship. Major themes for expenses were organized into three fundraising categories: medical care expenses (e.g., medical bills, travel expenses for medical visits), JDM research, and expenses not directly related to disease management (e.g., college fund, family vacation). All financial data were converted to USD based on current exchange rates. Data collection was completed on 8/27/21. | RE SULTSIn total, 83.3% (n = 40), 10.4% (n = 5), and 6.3% (n = 3) of campaigns were fundraising for medical care expenses for JDM, nondisease management expenses, and JDM research, respectively.Patient age ranged from 2 to 23 years old with a median age of 8 years. Specific campaign characteristics are recorded in Table 1.For campaigns fundraising for medical care expenses for JDM, the most cited expenses were treatment/medical bills (65.0%; n = 26), travel for medical care (27.5%; n = 11), and mobility/home renovations, for example, ramp to enter home (15.0%; n = 6). While only

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Section: Discussionmentioning

confidence: 86%

“…These burdens can complicate treatment goals, and their full extent often goes unrecognized and therefore unaddressed by medical providers. Previous studies have analyzed the use of crowdsourcing for more common dermatological diseases 3,4 …”

Section: Introductionmentioning

confidence: 99%

Crowdsourcing as a means of fundraising for juvenile dermatomyositis

Goldman

Kassamali

Shahriari

et al. 2022

Pediatric Dermatology

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“…1,2 To better understand the financial and psychosocial burdens of inflammatory skin disease, we sought to explore the use of fundraiser campaigns for these conditions on the publicly available crowdfunding website GoFundMe. Although previous research has characterized crowdfunding for individual dermatologic diseases, 3,4 this study intended to compare data among common inflammatory skin conditions to determine the differences in psychologic distress, out-of-pocket costs, and social factors contributing to financial burden.Fundraising campaigns were identified on the GoFundMe website using standard search functionality and included if the campaign was primarily raising funds for individual expenses for a person diagnosed with hidradenitis suppurativa (HS), atopic dermatitis (AD), psoriasis, or vitiligo (Supplementary Fig 1, available via Mendeley at https://data.mendeley.com/datasets/tnxx8g64mj/1). In total, 141, 173, 213, and 14 campaigns met the *Determined after 6 months of campaign activity.…”

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confidence: 99%

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confidence: 99%

Patient crowdfunding for inflammatory skin disease

Goldman¹,

Nwankwo²,

Tran³

et al. 2022

JAAD International

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“…5,11,12 Reimbursements for the medications, hairpieces, and wigs that may mitigate stigma are often limited or denied, adding to the patient's financial burden. 13,14 While numerous studies have examined the association of perceived stigma with impaired QOL among patients with alopecia, 15 the prevalence and magnitude of alopecia-related stigma by laypersons toward affected patients is unknown. 16 The present study sought to measure the prevalence and magnitude of layperson stigma toward individuals with varying degrees of alopecia and to analyze how the magnitude of stigma may be influenced by the characteristics of both the affected individuals and the laypersons.…”

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confidence: 99%

Evaluation of Stigma Toward Individuals With Alopecia

Creadore

Manjaly

et al. 2021

JAMA Dermatol

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IMPORTANCEPerceived stigma among patients with alopecia is associated with impaired quality of life; however, the magnitude of laypersons' stigma toward individuals with alopecia is unknown.OBJECTIVE To determine the prevalence and magnitude of laypersons' stigma toward individuals with varying degrees of alopecia and whether stigma increases with increased severity of alopecia. DESIGN, SETTING, AND PARTICIPANTSThis was a cross-sectional study using an internet survey administered to a convenience sample of adult respondents in the US participating on the Amazon Mechanical Turk platform. Portrait images of 6 individuals without hair loss were created using artificial intelligence and stock images. Each portrait was edited to create 2 additional versions, 1 with scalp hair loss and 1 with complete hair loss, for a total of 18 images. On January 9 to 10, 2020, the survey presented each internet respondent with 1 randomly selected portrait to be used in answering a series of stigma-related questions from 3 domains: stereotypes, social distance, and disease-related myths; the third domain was presented only to respondents who believed that the individual pictured had a medical condition. MAIN OUTCOMES AND MEASURESThe main outcome was the prevalence and magnitude of stigma of laypersons toward individuals with alopecia and the percentage of laypersons who believed the individual pictured had a medical condition as recorded in survey responses. RESULTSThe survey was completed by 2015 respondents (99.9% completion rate) with a mean age of 37 (range, 18-78) years; 1014 (50.3%) were men; 1596 (79.2%) were White; and 1397 (69.3%) had a college or postcollege education. Endorsement of every stigma item increased as alopecia severity increased (2.4%-27.6%). Absolute change on the stereotype (0.5-0.6) and social distance scales (0.2-0.5) also increased, indicating more stigma. The percentage of respondents believing the individual pictured had a medical condition increased as alopecia severity increased (33.6%-75.7%; P < .001). Among the subgroup of respondents who were asked to rate their agreement with disease-related myths, the absolute change on the myth scale decreased as alopecia severity increased, indicating decreased stigma (−0.7 to −1.2). CONCLUSIONS AND RELEVANCEThis cross-sectional survey study found that stigmatizing attitudes of laypersons toward patients with alopecia exist across a multitude of social and professional scenarios. Stigma prevalence and magnitude vary by alopecia severity and possibly by whether alopecia is believed to be a medical condition.

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Use of crowdfunding for expenses related to medical hair loss

Cited by 9 publications

References 5 publications

Crowdsourcing as a means of fundraising for juvenile dermatomyositis

Crowdsourcing as a means of fundraising for juvenile dermatomyositis

Patient crowdfunding for inflammatory skin disease

Evaluation of Stigma Toward Individuals With Alopecia

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